More about Debbie

After moving from Zale Lipshy to the Centre for Neuro Skills, I started my Traumatic Brain Injury rehabilitation with daily classes in physical therapy, occupational therapy, counseling, educational therapy and speech therapy. Debbie, my speech therapist, was also trained in dysphagia recovery, and, as I learned last week, she quickly determined that I had a very severe problem, not only with that condition, but also a version called “silent aspiration.” I had no awareness of my dysphagia. If my dysphagia went untreated, I would put me at a high risk of pulmonary aspiration and even pneumonia from food and liquids going the wrong way into my lungs, because I do not cough or show outward signs of aspirating.

First Debbie limited my eating to using the Gastrostomy Tube (G-Tube), which feeds me through a tube inserted into my abdomen so I cannot swallow at all. Then she began teaching me a number of swallowing maneuvers which are supposed to help keep your trachea closed while swallowing. These include the chin-tuck, where you lower your head until your chin presses onto your chest; effortful swallow; supraglottal swallow, super-glottal swallow; and the Mandelsohn maneuver. There is also a long list of foods and drinks I cannot have, with a much smaller list of those I can have. Along with the swallowing maneuvers, Debbie would use a device (pictured above on my head) that gave my chin electrical shocks each minute during our hourly sessions.

After a couple of months she began fixing me small meals each day consisting only of different flavors of yogurt. After several months of only being fed through my g-tube, yogurt was absolutely wonderful.

Five or six times during the year I was at CNS – about once every two months – I was taken to a large van outside in the parking lot to have a “swallowing test” where I would sit between racks of special equipment that could film what was happening inside my throat whenever I swallowed anything. The people in the van would give me a series of different foods, like puddings or thickened liquids, to see when I swallowed down my trachea, and how much. Sometimes my swallowing would be improved with more going down my esophagus rather than into my lungs. In early July the test was so good that it was decided that I could get completely off the g-tube and begin eating “real” food orally. But by early November when I had my final swallowing test, there had actually been little change since my first test in January.

When I left CNS in November of 2013, Debbie put me on a diet called “mechanical soft.” On that limited diet I was able to eat yogart, cottage cheese, pudding, oatmeal, grits, mashed potatoes, chopped spaghetti, mac and cheese, blended cream soups, applesauce, mashed bananas, well-cooked chopped vegetables, meats that had been finely ground or chopped with gravey, eggs (scrambled or poached) and foods that were pureed. I could not have cold cereal, no bread, no rice, no other soups, no other fruits unless blended in a yogurt-based smoothie, no raw vegetables, no salads, no cookies or cakes, no other meats, and especially no seeds, nuts, chips coconut or popcorn. Much to Debbie’s sadness I told her that I could not live with those restrictions. And the reason was not because I had to have steaks, hamburgers or desserts; it was because I had to have sandwiches or salads. I cannot live with neither of those in my diet. Debbie told me that if I did not conform to these limitations, within a very short time I would get pneumonia and die. I told her that a year earlier I HAD died, on the Inwood Road, lying there with no heartbeat and not breathing, and that I would die eating whatever I wanted rather than live with these restrictions.

Now more than a year after my last swallowing test, I am still pretty much happily eating whatever I want, and still surviving. What I learned then was that there is no cure for dysphagia. It will not go away, not even with all the exercises that Debbie taught me, and there is no surgery to fix it. While there are a number of other causes, mine is a result of brain damage. All I have is a lifetime of dealing with it. I do use the chin tuck whenever I eat, and only eat sitting fully upright. And yes, I will probably die from pneumonia in a couple of years, but I will be quite happy with whatever happens for the rest of my life. I love you Debbie and thanks for all that you did for me, but I want to spend the rest of my days – however short that may be – happily eating everything I love.

Dysphagia

Dysphagia is the medical term for the symptom of difficulty in swallowing. All or part of what I swallow goes down the “wrong way,” into my lungs rather than my stomach. This kind of swallowing happens occasionally to everyone, but they usually then start coughing, which clears the problem. Even most people with this dysphagia can do that. But some – including me – have “silent aspiration” so I don’t realize the swallow has been misdirected, and the food continues into the lungs with no coughing or other awareness. Over the next few hours and even into the next few days I will usual manage to expel that food, but I do that more from “clearing my throat” than simply just coughing, although it is really the same thing; I just have a bit more control over it and it usually isn’t so loud. When I am outdoors I can simply spit it out. Otherwise, I just chew it up and try to swallow it again!

My dysphagia was caused by the accident that also caused my brain damage, or, rather, the subsequent removal of part of my skull in order to relieve the pressure caused by the swelling of my brain. The doctors knew about the dysphagia when they attached a gastrostomy tube (g-tube) to my stomach. But while I was at Zale Lipshy they did not use the g-tube for feeding after I came out of the coma, but rather wanted me to eat normally, and chastised me when I did not want to eat at all.

I just realized that that is not true! That is what I have believed happened to me two years ago, but I have been wrong. The doctors who operated on me at Parkland had no way of knowing about the dysphagia! They inserted the g-tube only because I was going to be needing it for a few weeks while I was in the coma. The people at the Centre for Neuro Skills (CNS) diagnosed  my dysphagia after I moved there in January of 2013. And the folks at Zale Lipshy were not being mean to me because I wouldn’t eat; they did not know!

Debbie, pictured above, is the wonderful therapist who discovered my dysphagia and spent eleven months teaching me how to live with it.

Two years of therapy later

RAN (Rapid Automatic Naming) Module

Yesterday was the second-year milestone of the day when I was taken to Parkland with a brain injury. I want to let you know about the status of my recovery and what I expect for my future.

Two years ago I spent two months at Dallas’s Parkland and Zale Lipshy, followed by eleven months at Irving’s Centre for Neuro Skills, seven months as an inpatient and four outpatient while living at home. I then spent a couple of months in the Baylor Institute for Rehabilitation (BIR) Outpatient Services clinic in Garland, and for the past year I have been at the University of Texas at Dallas (UTD) Callier Center, Richardson, where I plan to continue my rehab into next year.

When I first began my recovery I could not read at all. In fact, I could not say or read any letters on the alphabet. I spent many months reading the list of letters (see the RAN page above). One of the last letters I had problems remembering was “K” which really caused grief for my reading teacher Kimberly!  The situation was pretty much the same for numbers – I could not count to ten or do any arithmetic. I could not remember where I had worked or what I had done at work. I could not remember where I had lived – even six months later I could only name four of the seven US states in which I have lived. I remember a time when I would try to talk about Oklahoma, where I had lived for ten years from 1997 through 2007, by asking Jean, “What’s that state just north of Texas?” Even now, two years later, when I hear a mention of “democrats” or “republicans,” I have to think a second before I can remember which party is which. And remember, at the time I was in a coma in Parkland, we had the 2012 election for which I had been a CANDIDATE!

While my ability to read is still at about a 4th grade level, I never lost my ability to write. About six months into my rehab at CNS, my counselor Brian wanted to see what my writing skill was – since I had such trouble even reading at all, no one had bothered to check my writing yet. He asked me to sit down at his computer and type something, so I did and quickly typed, “Now is the time for all good men to come to the aid of their country.” I could type that completely in less than one minute! But I still had difficulty reading it, even after I had written it! Apparently two different  parts of the brain control reading and writing. Similarly with math, after struggling with that for two or three months, I simply awoke one morning able to easily do basic addition exercises like 6 x 8 = 48 and 9 x 7 = 63. Just a few of weeks earlier Kimberly had given me a page of 100 arithmetic problems to do and after struggling through seven or eight problems, I put down my pencil and said that I could not do it. She looked at what I had done and I’d only got one or two correct. So after I told her about suddenly remembering arithmetic, Kimberly gave me that test again and I completed the rest of the page in less than twenty minutes and got all the rest – about 92 problems – completely correct!

I am also still working on my memory. Originally I could not remember the names of states, countries, people or anything else. My favorite person at CNS was Nicole, my Neuro Rehabilitation Specialist. It took me six months to be able to remember her name, and even today, it escapes me more then I’d like to admit. Some names I have no problem with: Jean, Evan and even Mirjam, but most names I still have trouble remembering.

There were a couple of injuries resulting from being hit by that car that were never identified during my time at Parkland. At CNS they knew that I had some vision problems and they suggested that I go see a brain injury specialist about it but because of the costs involved I never did that until last month. Dr Poonam Nathu found that I needed some exercises to strengthen my vision and also wanted me to switch to bifocals to improve my reading. She called Diane, my therapist at Callier to work out a program of exercises I needed. About the same time I had some x-rays done which found that the accident also caused a fracture in my coccyx which was mostly healed. I think that may have been why I had so much trouble on my wheelchair at Zale Lipshy and kept wanting to go back to bed in my hospital room all the time. Anyway, since the fracture has pretty much healed over the past two years, and the pain is mostly manageable, I will probably get by with just using a coccyx orthopedic comfort seat cushion – also known as a donut pillow.

But even when I do struggle with some parts of my rehab, so much else is coming nicely. Two years later I am happier, stronger and healthier than I have ever been in my life. I have gotten into the habit of daily exercise, learned to eat everything (even all the things I used to hate), lost over a hundred pounds and retired from working. And I am now signed up for Medicare, which starts January 1. I love it!

 

How I learned to love to exercise

I spent all my life avoiding any kind of athletics and exercise. At twelve I was on a Little League Baseball team, where I must have been the worst player in that league. Throughout the entire season of about 10 or 12 games I only played one inning in the field, at first base, and only batted once, striking out on three pitches. The next year the league instituted a new rule, which still exists, which requires all players to appear in each and every game. My family called that the “Pat Spreng rule of 1962.”

In junior high and high schools I was in the band partly so I would not have to take gym or physical education (PE). In college, we were required to take four semesters of PE, so I took archery, probably the least demanding athletic activity there is, even a little less demanding than bowling, another sport at which I excelled.

So on January 2nd, 2013, six days before my 63rd birthday, I arrived at the Centre for Neuro Skills where my daily rehab class schedule included not only reading, mathematics, counceling and occupational therapy, but also physical therapy. I thought that was totally unnecessary. Unlike many of the other TBI patients, I had no physical injuries (except for a strained left elbow, probably from landing on the car’s hood or windshield). I had brain injuries.

Although I arrived at CNS in a wheelchair, I had stepped out of that before my son’s wedding, just over a month later. Once I could walk again, I started walking around the CNS building each day that the weather was nice, using the treadmill equipment whenever it was not.

Then I started really thinking about my situation. I was serious about losing a lot of weight and here I was about to spend ten or twelve months rehabilitating my brain while working every day with a team of people who were the most highly-trained physical therapists in the world, not to mention being stocked with some of the best training equipment anywhere. I would be a fool not to work hard and take advantage of it all while I was there.

Let me tell you about some of these people, starting with Sunil, Vanessa and Whitney. Also Milena, Karla, Chris and many others whose names I can’t remember. Sunil is from India and has a terrific sense of humor. Early on he flat out just told me to stop using the wheelchair and just get up and walk. It wasn’t quite that easy, but within a week I was comfortable without it, and after a few more days I could climb up into the vans CNS used to carry patients between the apartments and the clinic each day.

Shortly after I began walking, Milena, a physical therapist from Maracaibo, Venezuela, told me that six or seven times around the building was about a minute. It took me about a month to work my way up to walking that far and I found out that in the 50 minutes I had for each class at CNS, I could usually make about 12 or 13 laps. So I would start as soon as I came into class, about five to seven minutes before class time to start, allowing me enough time to do fourteen laps, about two miles. My instructor for that day soon knew that that was what I wanted to do each day, and would allow me to do that unattended, as long as I promised to come back. There were a few times when something else was planned for my hour and they would flag me down and tell me to come back in, but that only happened three of four times, and was not a problem for anyone.

It has now been eight months since I left CNS with my daily two-mile walks around the building, but I have continued to do my walking, doing two or three miles three or four times each week. In fact, I reached a personal milestone this past week, my weight dropping below 200 pounds for the first time in about forty years. I intend to continue walking this much as long as I can for the rest of my life.

Taking controll of my weight

Since 2011 I have lost well over 100 pounds. No counting calories, no Nutrisystem, no WeightWatchers, no Dash Diet, TLC Diet, Mayo Clinic, Mediterranian, Flexitarian, Volumetrics, Jenny Craig, Biggest Loser, or Ornish. I lost weight – and am still losing it – by simply eating a lot less. Every day. Every meal. I still eat whatever I want (except for a few things like Oreos), I just don’t eat so much of it.

I must say that I am not saying this is the best way for anyone else to lose weight. It is simply the way I lose weight.

I was a very skinny child. My mother tells me of the years she had to read to me or tell me stories just to distract me so she could slip a spoonful of soup or potatoes or whatever into my mouth. In my first two years of grade school my lunch consisted of nothing more than a cup of soup and a cup of milk. When I got home each day and my mother asked what I’d had for lunch, I would say, “The same-old, same-old,” meaning soup and milk. A new grade school opened closer to my home when I entered the third grade. Fortunately, the nutritionists there would not allow me to have lunch that way, and started making me get other options, like meatloaf, vegetables and desserts. During the next eight years I grew from a skinny little kid to a chubby young boy. I can remember when I was about ten and had to move up from the “boy” sized bluejeans to the “chubby’s.”

I spent my high school and college years fighting my weight year after year and mostly putting on weight until I wrecked my motorcycle the summer I entered the senior year of college and broke my jaw, having it wired shut for eight weeks. A year later when I got married, I weighed about 185 lbs.

I kept my weight under 200 during the next five years until I got a job working in downtown Dallas at Lone Star Gas Company, where I was within a short walking distance of dozens of places to get lunch. For the next seventeen years I ate whatever I wanted every day, mostly getting pizza, hamburgers and Tex-Mex, every day for lunch. I would go out to lunch with friends, co-workers, or, mostly, by myself. By the mid-1990’s I had grown to well over 300 pounds. I stayed that way, ranging from 315 to 325 for another ten years, until my 19-year-old (at that time) son Evan, who weighed as much as I did, went on a simple diet of eating pretty much what he wanted, but in much more sensible portions. He lost 150 pounds over about four years, so  I started a similar program. By the time I went into the hospital on November 1, 2012 I was down to 290 – 35 lbs less than my maximum.

One of the brain injuries I sustained from being hit by a car was dysphagia (difficulty in swallowing). They put a gastric feeding tube (G-tube) in my belly through which I was fed completely for about six months. During that time I lost 65 lbs, after having lost 35 lbs in the five years before the accident, for a total of 100 lbs, since I had weighed a high of 325 lbs, just six years earlier. I would not recommend this method, living nearly a year from a gastric feeding tube, but it worked out well for me.

Since having the g-tube removed and returning to normal feeding, I have still lost another 20 pounds, and I hope to get down to 200 lbs well before the end of this year (2014). (Note: At the end of July 2014, I now weigh 199 lbs.)